Carer resources.

Here you will find information on how to ensure you are aware of and able to access statutory supports for living with autism.

CARER’S FACT SHEET

Pre and Post diagnosis support and access to services – but only if you ask!

Consider self referring to Social Work under Section 12 Social Work Scotland Act (1968) – call in to local office or call to duty worker. This will allow you to get the ball rolling and find out what supports might be available e.g. early Nursery placement, Early Bird course or equivalent, discussion of child’s needs.

Post diagnosis- Request full benefits check via Social Work or directly with Welfare Rights.

Refer to Social Work and request Section 23 Children with disability assessment (also covers other children affected) Children Scotland Act (1995),

and Section 24 Carer’s Assessment – Children Scotland Act (1995)

Carer’s support plan is likely to supersede section 24 Assessment in 2017 with introduction of Carer’s Bill (Scotland).

Sadly when pursuing statutory entitlements from local authorities many obstacles are usually encountered. It is often worth making contact with your local councillor(s) and or MSP for support early on in the process.

Various other government funded schemes might also be worth pursuing e.g

Family Fund, Take a Break.

Many families are put off because of a lack of Social Work reaching out to families in many authorities and because of perceived stigma around benefits.

Remember however as a parent your ability to work is likely to be curtailed and services like respite are often harder to get later on. (and your child may cope better in the long term with an early introduction). Caring for a disabled child is a task that is likely to get harder as life goes on. In Scotland alone Carer’s save the public purse around £10 billion per year.

 

TIPS FOR REVIEWS.

Make sure the time and place is suitable and comfortable for you.

Try not to go alone to reviews especially multi disciplinary reviews. Consider finding an advocate or knowledgeable and supportive friend. CAB, Mindroom.org, local independent advocacy project., I.B.A.

Ask for an agenda before hand and contribute to it in period leading up to     .               the review. Always ask what care speak and acronyms mean.

Go with a plan or idea of what you want to achieve. (be realistic but not afraid to state your case).

Ask for a little more than the basic you can survive on. e.g. Respite – ask for 25 nights when 20 would be ok ish! This is ok as they are likely to reduce what you ask for anyway.

Take a list and some “prompt” words on it – respite, transport, assessment to keep you focussed and avoid being side tracked.

Take some of your own notes – this is allowed – it’s your review!

Never agree to anything you are not entirely comfortable with, you would take a cooling off period prior to a major purchase, this is much more important!

Keep phrases up your sleeve like “I would like a few days to consider this” or ” I would like a chance to discuss this with my significant other” etc.

Ask for anything particularly noteworthy to be recorded in the minute –  “Could you make sure the minute includes the feeling/ decision that Andy be referred for a sensory profile assessment and include a timescale for this? ”

If meeting is going badly or you cannot function as you would like or have become emotional, stressed or your child is being very “challenging” etc.etc. Remember it is fine to say “I am sorry but I would really like to stop this just now and reconvene at another time.”  It takes a bit of boldness but is acceptable. (if you have an advocate or supporter with you a pre arranged signal to them could be used and they can request the meeting to be reconvened on your behalf)

Remember many parents feel intimidated in this type of situation. You are normally outnumbered and vulnerable as your family life is dissected often by relative strangers. It is normal to feel like this. Prepare, Plan, Take Support, Try not to be pressured and don’t forget YOU ARE THE EXPERT ON YOUR CHILD.